So I have MdDS. We know this. I've officially had this syndrome for four years. It's something that I have had to learn how to cope. I have had to relearn how to do basic tasks. I've had to figure out shortcuts for somethings and I've had to learn how to take the long route with other tasks. But that is what I've had to do with dealing with this syndrome.
But what about my family? What has my husband had to figure out? What about my kids? What do they give up? What don't they understand or can't figure out? How have they had to cope? What has changed for them?
I am one of the lucky few who has an amazing support group at home with my friends and family. They researched along with me. They have called me on my bad days. Bought me small gifts to keep me busy when I was going crazy being stuck at home. My husband took me to most of my appointments when we were struggling with what was wrong. Late nights or early mornings in the ER. He's been there to literally pick me up off the floor. My friends talk to me through messenger or video chats when I'm feeling lonely. They bring me up when I'm feeling down. My kids have recognized when I'm struggling with standing still or walking on tile floors and are quick to grab my hand to keep me stable. They like to cuddle with me when I'm stuck in bed and understand when mommy can't watch a movie with them, but I'll listen to it. But again I'm one of the lucky few.
One of the biggest issues that I see come up in our support groups is the lack of support outside of those groups. It makes me sad, but it makes me wonder why. Why isn't there an understanding when one of your loved ones is struggling. There is a need here for educating those around us. Unfortunately there isn't a support group for those who live with someone with MdDS. Maybe this is something that needs to happen. So many people have messaged me or talked via phone with me about how their family "just doesn't get it" or "they want their mom/dad back to normal" or "they don't believe that I'm struggling". That one hurts most I think.
We are already dealing with medical professionals telling us "it's all in your head." The last place we need to hear it is at home. Home is the place where we should be able to find that undying support and love, but unfortunately that doesn't happen. There is ridicule, hurtful comments, fighting and frustration in a place where there is already so much anxiety and stress.
So the question comes out....How do we get them to understand especially when we don't understand this all ourselves? For some, you have said vows that include "in sickness & in health" and this is sickness. This is really bad sickness, because there are no right answers. Can we truly expect someone to understand something that there are no definite answers to? So then you work on what we do know. We know we rock. We know we deal with the inner ear issues. We deal with the nausea. We deal with anxiety and depression.
The best start is communication. Not just from us MdDSers but those around us. Listen to what they have to say. Stop fighting every word that is said, but listen carefully. What is frustrating them? What is hurting them? What are they scared of? Many of us have seen counselors in the past and this may be a time when someone else needs to be brought in to figure out a good solution for all parties involved.
For some of us, this is a syndrome that we will have for a long time. There is no getting around it. No magic pill that will take it all away. No magic treatment that will have it disappear forever. Not yet at least. So in the meantime, we need to find solutions to have those around us have a better understanding. To give the support to them as well. To help them cope.
The other side of it is us pushing through what I call "My pity party, population 1." Being positive within myself helps with my family willing to learn and understand what I'm dealing with. I'm not saying to pretend or "fake" feeling good. I'm talking about knowing what you can and cannot change within yourself to better your life. Trying to have a positive outlook on life that things will get better helps. And I have communicated that with my husband, my kids, my family & friends. On those lower symptoms days that I have, I push myself to do as much as I can, so that on my really bad symptoms days I don't feel so bad.
And those pesky bad days? Even those days I set small goals. Even if it is moving clothes from a washer to a dryer, picking up one room in the house, cooking a small meal. And I get excited about accomplishing those small goals as much as I celebrate the big goals. Every step counts. Again, communicating those goals to those around me, so when I feel like giving up, those people push me not to.
This syndrome can destroy. It can destroy those MdDSers. It can destroy families. It can destroy relationships. We need to figure out a way to not let that happen. We need to figure out a way to get a better understanding of our disorder so those around us can understand and help. Even if we get a random high-five for being able to go from sitting to standing without falling. Even if it recognizing we are trouble due to a type of lighting in a room and removing us from that area. Even if it is a thank you for cooking dinner, even if that dinner came from the freezer. Or even if it that person not pointing out you being stuck in bed all day because the symptoms are so extreme. Support comes in many different ways. And us MdDSers need it.
Friday, July 1, 2016
Monday, June 20, 2016
"Stories"~Trapt
Every day a new story begins for a fellow MdDSer. Someone who was recently diagnosed or someone who finally has the courage to accept their diagnosis and share it with others. Someone speaks up with the trials of getting a final diagnosis. Someone who has started a new treatment in hopes that it will work for them.
Every day we hear stories of how our journeys begin with MdDS. Was is a cruise, a flight, a car ride? Or was is something completely different like a surgery, a dental procedure, an elevator ride or a trip on a roller coaster? Was it instantaneous or did it slowly get worse over time? The journey for everyone is different, but we all end up on the same boat.
Every day we hear stories of how we are coping. We hear about different treatments doctors are trying to do to figure out what will work. I always say, I have MdDS and there is no cure, YET. It takes doctors finally believing in this disorder and willing to try different meds or techniques to get patients through it. Some treatments work for some patients. Some don't. But every day we open up about what we are trying to do to make our lives better. You never know what might work for someone else.
Every day we hear stories of loved ones. Those that are supportive and those that are not. I'm one of the lucky few who has the support of those around her to be able to overcome some of the worse symptoms. Unfortunately, there is a large percentage who are not as lucky. Those stories are the hardest to hear for me. No one knows what living with disorder is like, but then again like my husband tells me, "You don't know what it is like to live with someone who has this disorder." He doesn't say this to put down my disorder, but for me to understand the stress of a caregiver, which is what he is. Since telling me this, I have tried harder to explain what I'm feeling and he has explained to me how it affects him. I give him compassion just as much as I expect the same compassion given to me. (Idea for new post after this one....the perspective of the people around us....but back to this post).
Every day we have new supporters on our group show up to tell their stories of their loved ones and how they want to learn. They share their stories and we listen and give advise on how to help their loved ones. Their stories are just as important as ours because they are trying to better handle their own situations with this confusing disorder.
And every day we hear stories of hope. Hope for a better tomorrow. Stories of strength and courage. Stories of faith and love that we will get through this. Stories that we are no longer alone in a world that can feel very lonely. Stories of a possible cure one day. I always say, "I have MdDS. There is no cure, YET!" I have the hope that one day I can change that statement to "I had MdDS."
Our stories are important. Our stories get our words out into the world. Our stories are getting doctors to listen to us and try to help us. Our stories help each other with coping, with showing support for one another all over the world. Our stories need to be told so that the world can hear our cries for help but also our cries of strength. Our stories are important because without our stories we won't find a cure, we won't find out how many people are truly affected by this disorder, and the world will never know how bad this disorder can really be for each of us.
Our stories are important because there are those with MdDS who cannot speak of their disorder for fear of losing their jobs, their families, everything. Our stories are important because right now, in this moment, are stories are pushing us to do more, be more.
So every day I look for the new stories, and I write more to my story. I write for those who can't. I write to no only help myself cope, but also I hope that my words help others.
Every story is different, with one similarity, MdDS.
Every day we hear stories of how our journeys begin with MdDS. Was is a cruise, a flight, a car ride? Or was is something completely different like a surgery, a dental procedure, an elevator ride or a trip on a roller coaster? Was it instantaneous or did it slowly get worse over time? The journey for everyone is different, but we all end up on the same boat.
Every day we hear stories of how we are coping. We hear about different treatments doctors are trying to do to figure out what will work. I always say, I have MdDS and there is no cure, YET. It takes doctors finally believing in this disorder and willing to try different meds or techniques to get patients through it. Some treatments work for some patients. Some don't. But every day we open up about what we are trying to do to make our lives better. You never know what might work for someone else.
Every day we hear stories of loved ones. Those that are supportive and those that are not. I'm one of the lucky few who has the support of those around her to be able to overcome some of the worse symptoms. Unfortunately, there is a large percentage who are not as lucky. Those stories are the hardest to hear for me. No one knows what living with disorder is like, but then again like my husband tells me, "You don't know what it is like to live with someone who has this disorder." He doesn't say this to put down my disorder, but for me to understand the stress of a caregiver, which is what he is. Since telling me this, I have tried harder to explain what I'm feeling and he has explained to me how it affects him. I give him compassion just as much as I expect the same compassion given to me. (Idea for new post after this one....the perspective of the people around us....but back to this post).
Every day we have new supporters on our group show up to tell their stories of their loved ones and how they want to learn. They share their stories and we listen and give advise on how to help their loved ones. Their stories are just as important as ours because they are trying to better handle their own situations with this confusing disorder.
And every day we hear stories of hope. Hope for a better tomorrow. Stories of strength and courage. Stories of faith and love that we will get through this. Stories that we are no longer alone in a world that can feel very lonely. Stories of a possible cure one day. I always say, "I have MdDS. There is no cure, YET!" I have the hope that one day I can change that statement to "I had MdDS."
Our stories are important. Our stories get our words out into the world. Our stories are getting doctors to listen to us and try to help us. Our stories help each other with coping, with showing support for one another all over the world. Our stories need to be told so that the world can hear our cries for help but also our cries of strength. Our stories are important because without our stories we won't find a cure, we won't find out how many people are truly affected by this disorder, and the world will never know how bad this disorder can really be for each of us.
Our stories are important because there are those with MdDS who cannot speak of their disorder for fear of losing their jobs, their families, everything. Our stories are important because right now, in this moment, are stories are pushing us to do more, be more.
So every day I look for the new stories, and I write more to my story. I write for those who can't. I write to no only help myself cope, but also I hope that my words help others.
Every story is different, with one similarity, MdDS.
Thursday, June 9, 2016
"Can't Stop The Feeling"~Justin Timberlake
Four years ago. I was diagnosed with MdDS. I was fighting a losing battle with my own body. Not quite understanding what was happening to me and realizing that things were going to change for me. I was researching and finding out as much information as I could about my diagnosis and what I could do to try to get better.
Three years ago. I wrote a blog about my first time driving in over a year. I hadn't been able to actually drive myself. I was good riding, but not driving. I didn't drive far, but I did drive and since then you can't keep the car keys out of my hand.
Two years ago. I started working more hours and set myself a goal to start working full time at my job. This was something that I couldn't imagine doing again. With the loving support of my work family, and very understanding bosses, I was able to push and work through physical & mental obstacles to be able to accomplish that goal later that summer.
A year ago. I had a period of remission earlier in the year, but it only lasted a few months. I was discouraged, upset and frustrated. But I also realized that this is how it is going to be and it is something that I have to accept and deal with. I still have issues with being able to feel this way, but I am getting better.
Today. Today I feel great. After a few weeks of feeling miserable and having a hard time getting around and being able to live my life, the last two days have been really good. Symptoms have been really low. I have my energy back. I have my smile and laugh back. Last night I cooked dinner for the first time in a really long time. Tonight I did tons of laundry and getting stuff organized in the house. I danced around to music and just felt amazing. Even with some stressful moments at work, I handled them really well.
So what does all this mean? Welp, there are good days and bad, just like anyone else. Mine just happens to come with the motion of the ocean. I'm allowed the bad emotional days, but I really love my happy girl days. Those days were I can goof off and have my sense of humor and just be fun, just be me.
So today, I laughed, joked around, goofed with my kids, talked with friends, and danced in my room. Today I got to be happy me. BEST. FEELING. EVER!
So today, for my MdDS friends who can't get up and dance, I'm blaring some Justin Timberlake and dancing for you. Cause none of us "Can't stop the feeling" of the rocking, but the beat of the music is too good not to move to it, even if you're just swaying to it.
Three years ago. I wrote a blog about my first time driving in over a year. I hadn't been able to actually drive myself. I was good riding, but not driving. I didn't drive far, but I did drive and since then you can't keep the car keys out of my hand.
Two years ago. I started working more hours and set myself a goal to start working full time at my job. This was something that I couldn't imagine doing again. With the loving support of my work family, and very understanding bosses, I was able to push and work through physical & mental obstacles to be able to accomplish that goal later that summer.
A year ago. I had a period of remission earlier in the year, but it only lasted a few months. I was discouraged, upset and frustrated. But I also realized that this is how it is going to be and it is something that I have to accept and deal with. I still have issues with being able to feel this way, but I am getting better.
Today. Today I feel great. After a few weeks of feeling miserable and having a hard time getting around and being able to live my life, the last two days have been really good. Symptoms have been really low. I have my energy back. I have my smile and laugh back. Last night I cooked dinner for the first time in a really long time. Tonight I did tons of laundry and getting stuff organized in the house. I danced around to music and just felt amazing. Even with some stressful moments at work, I handled them really well.
So what does all this mean? Welp, there are good days and bad, just like anyone else. Mine just happens to come with the motion of the ocean. I'm allowed the bad emotional days, but I really love my happy girl days. Those days were I can goof off and have my sense of humor and just be fun, just be me.
So today, I laughed, joked around, goofed with my kids, talked with friends, and danced in my room. Today I got to be happy me. BEST. FEELING. EVER!
So today, for my MdDS friends who can't get up and dance, I'm blaring some Justin Timberlake and dancing for you. Cause none of us "Can't stop the feeling" of the rocking, but the beat of the music is too good not to move to it, even if you're just swaying to it.
Monday, April 25, 2016
"She Used To Be Mine"~Sara Bareilles (lyric video included)
This song has touched so deep in me. It goes back to my last post about feeling the loss of myself and learning the new me. Being okay with the way that I am now and accepting the new.
I take it day by day, working through different emotions. I put on a brave face, and laugh a lot of it off because if I don't I'll break down, and I don't want to do that any longer.
I've opened up a lot more about it. What it does to me, how it affects everyday life. What I've accomplished in the last four years but also what I struggle with every moment.
I've come to the realization that most treatments won't work for me, and it is not that I've given up on finding something that will work, but I'm not willing to put myself at risk to make things better. I'm not willing to risk my sanity. I can't do that to myself or my family. I've lost so much already, I can't lose my strength that I've gained over the last few years and even the last few months.
Lately I've been working on me and my self confidence, because I've lost a lot of it. I've learned how to play a lot of it off and pretend that I'm someone I truly don't feel on the inside. But I'm getting there. I'm doing things that make me feel whole. I'm doing things that make me feel good about myself. I'm starting to look into the mirror and find who I feel I am meant to be. I'm seeing that fire in my eyes that I thought lost. I'm seeing the strength even on my weak days. I'm finding the good and looking past the bad.
I'm opening up more to those around me with the hope that I find acceptance, but even if I don't I'm okay with that. I'm showing you who I am. I'm giving my all and not expecting understanding anymore. I know that some won't get it but this is me. I get frustrated more than I used to, I get upset, I break down. I'm not always happy go lucky and everything is great. But those happy moments you see, they are genuine. When I do smile and laugh, it is a true laugh and meaningful smile.
And those days that I don't see the good, when I've lost sight of myself, I have amazing friends and family who show me what they see. I go back to that mirror and find what they see. I remind myself that I am somebody. That I'm understood. I'm strong. I'm capable. I'm compassionate. I'm caring. I'm beautiful inside and out. and I'm loved. I'm so loved. By many. And hearing that makes the hurt and sadness and the frustration and the anger slowly go away.
Thursday, April 14, 2016
"Crystals"-Of Monsters and Men
The mental stress of MdDS is ridiculous. And until these last few weeks did I really start to understand why.
Since being diagnosed with MdDS, I've now also been diagnosed with panic attacks, anxiety and depression. For someone who is as energetic and outgoing as I am, to struggle with these type of mental illnesses is extremely difficult. You're already dealing with an "invisible disorder" and now lets just throw on more to the pile of crap that no one can see, believe or understand.
I was diagnosed with depression when I was a teenager (completely separate from what I have now). It was an extremely scary time for me. I had such a hard time with getting my thoughts out of my head. I used to write then whether it on paper, in books, or even on my bedroom walls, but I got it out anyway that I could. I hurt those closest to me, I was extremely emotional, and felt completely out of control of myself. I lost me. I lost who I was. But once situations changed, I got better. Much better.
But this time I can't change my situation. I can't fix it. I can't make it any better than what it is. But the anxiety and depression has been at an all time high these last few months. The panic attacks are intense. I go a few weeks of feeling okay, but then I get the bad days. The over-emotional days that I feel I'm out of control of everything, that I'm losing everything, I'm losing myself again. And I'm not sleeping because of it. Too much going through my head at once to try to get it to stop.
I started seeing a counselor for it. I'm trying to get a grasp on all of it, and figure ways to approach it all in a better way. Like I've said before, I can't take a lot of the meds they want to you to help with the symptoms to regulate it all, so I have to work with my own brain to try to train it think of things in a different way, see things in a different light.
In my last session, I talked about everything that has changed in the last 4 years. She pointed out that I'm finally grieving. Grieving for the loss of who I was. Something that I should have done a long time ago. Because I did lose her. Even if I miraculously go back to no more rocking, no more movement, etc. I will never been the same girl I was back then. I will never be that Sara again. I can't be. I have to let her go and accept that this is the new me. This is who I am 100%. Even if I go to a time with no more MdDS, I'll always be that girl who had MdDS, who struggled and fought and relearned how to live life all over again. It's hard to lose someone close to you, it's even harder when it's yourself. How do you cope with that sort of loss? How do you accept that sort of loss? and How do you move forward? You grieve, just like with anyone else you lose.
So I guess that's what I'm in the process of doing. I'm learning to cope with the emotional side of things. I figure though, if I learned how to walk, drive, cook, climb stairs and exercise all over again, then I can learn to deal with the chaos in my head. Learning not to hid it all, but to be okay to get mad, upset, frustrated, but also be happy and accept the good as well.
And just like the MdDS symptoms of understanding there will be good and bad days, it'll be the same with the panic attacks, anxiety & depression. I will have my good days, my great days, and then there will be the not so wonderful days. And it's okay for me to feel this way.
Since being diagnosed with MdDS, I've now also been diagnosed with panic attacks, anxiety and depression. For someone who is as energetic and outgoing as I am, to struggle with these type of mental illnesses is extremely difficult. You're already dealing with an "invisible disorder" and now lets just throw on more to the pile of crap that no one can see, believe or understand.
I was diagnosed with depression when I was a teenager (completely separate from what I have now). It was an extremely scary time for me. I had such a hard time with getting my thoughts out of my head. I used to write then whether it on paper, in books, or even on my bedroom walls, but I got it out anyway that I could. I hurt those closest to me, I was extremely emotional, and felt completely out of control of myself. I lost me. I lost who I was. But once situations changed, I got better. Much better.
But this time I can't change my situation. I can't fix it. I can't make it any better than what it is. But the anxiety and depression has been at an all time high these last few months. The panic attacks are intense. I go a few weeks of feeling okay, but then I get the bad days. The over-emotional days that I feel I'm out of control of everything, that I'm losing everything, I'm losing myself again. And I'm not sleeping because of it. Too much going through my head at once to try to get it to stop.
I started seeing a counselor for it. I'm trying to get a grasp on all of it, and figure ways to approach it all in a better way. Like I've said before, I can't take a lot of the meds they want to you to help with the symptoms to regulate it all, so I have to work with my own brain to try to train it think of things in a different way, see things in a different light.
In my last session, I talked about everything that has changed in the last 4 years. She pointed out that I'm finally grieving. Grieving for the loss of who I was. Something that I should have done a long time ago. Because I did lose her. Even if I miraculously go back to no more rocking, no more movement, etc. I will never been the same girl I was back then. I will never be that Sara again. I can't be. I have to let her go and accept that this is the new me. This is who I am 100%. Even if I go to a time with no more MdDS, I'll always be that girl who had MdDS, who struggled and fought and relearned how to live life all over again. It's hard to lose someone close to you, it's even harder when it's yourself. How do you cope with that sort of loss? How do you accept that sort of loss? and How do you move forward? You grieve, just like with anyone else you lose.
So I guess that's what I'm in the process of doing. I'm learning to cope with the emotional side of things. I figure though, if I learned how to walk, drive, cook, climb stairs and exercise all over again, then I can learn to deal with the chaos in my head. Learning not to hid it all, but to be okay to get mad, upset, frustrated, but also be happy and accept the good as well.
And just like the MdDS symptoms of understanding there will be good and bad days, it'll be the same with the panic attacks, anxiety & depression. I will have my good days, my great days, and then there will be the not so wonderful days. And it's okay for me to feel this way.
Friday, January 15, 2016
"The Light"~Disturbed
The confusing part about MdDS is that it doesn't make any sense. None. Its like BAM! here's this syndrome you have that doesn't quite match other sufferers, but somehow you are all linked and now you need to figure out how to cope and live with it with no reasons as to why it happens or how to fix it and make it go away permanently. The symptoms change for each person who suffers, but a predominantly someone suffering from perpetual rocking/swaying motion. There are certain remedies that help certain sufferers such as medications, chiropractic manipulations, vestibular therapies, etc. But what works for one, doesn't work for all.Currently there is no definitely diagnostic study to provide a definite diagnosis of MdDS. There is no cure for MdDS.
It's a battle. A huge battle. A struggle.
One day you are feeling your "new normal", as I like to call it, because well, yes, this is my new normal....it's definitely not my old normal life. The next day you are laid out and can't do much of anything. It can even happen within a day's time, from morning to afternoon.
I've talked before about the scale that symptoms are rated. This scale helps MdDSers explain exactly how they are feeling on a day-to-day basis. It's a way for us to better understand where someone is standing, or in our case rocking/swaying. My scale fluctuates a lot more lately. I've noticed stress makes the symptoms worse, weather pressure symptoms pretty much put me out for the day. Sitting, or laying, and listening to music helps my symptoms calm down, as well as keep up with a good diet and staying hydrated.
I've recently gotten back into exercising again and I have found there are a lot of movements that I am just unable to do anymore. Even on the good days, the motions cause too much stimulation around me to make it safe for me to complete the exercises, so I've learned to modify them to work for me. Burpees are a definite no for me but I can break down the movements with small breaks in between each part and I can do it. I stay away from face-paced movements and stick with the slower motions and this helps. The exercising has been helping with my core strength and balance. But as much as I love exercising, there are days that its just impossible for me to do any of it. However, I'm learning what new things I'm capable of doing and what are some of my new limitations.
Every day is a learning experiment. It's learning what your limitations are for the day and being okay with it. It is knowing when to make a judgment call for not only yourself but those around you and decide if you should stay home or go out in public.
Unfortunately with there being very little information about MdDS out there in the general population, for most of us the choices are taken from us. Others don't understand what you are dealing with, how it feels and how to deal with someone with this syndrome. I can't just pretend like it doesn't exist. I can't make it temporarily go away so I can go into work for a couple of hours or drive to the store or walk around a mall. I can't just "walk normal" or stand still while talking to you. Sometimes it is just not a possibility.
Then again, sometimes I will be doing well that day and I am standing straight. I'm dancing and jumping around the room. I'm running. I'm bending over and standing back up with ease. No I'm not faking my symptoms or exaggerating what is happening with me. I'm just having a better day. I really really like those days.
So yea, MdDS is confusing. Mind-boggling actually. But MdDS is just a part of what I deal with every day. And I'm still coping and moving forward, even if its a crooking motion forward.
It's a battle. A huge battle. A struggle.
One day you are feeling your "new normal", as I like to call it, because well, yes, this is my new normal....it's definitely not my old normal life. The next day you are laid out and can't do much of anything. It can even happen within a day's time, from morning to afternoon.
I've talked before about the scale that symptoms are rated. This scale helps MdDSers explain exactly how they are feeling on a day-to-day basis. It's a way for us to better understand where someone is standing, or in our case rocking/swaying. My scale fluctuates a lot more lately. I've noticed stress makes the symptoms worse, weather pressure symptoms pretty much put me out for the day. Sitting, or laying, and listening to music helps my symptoms calm down, as well as keep up with a good diet and staying hydrated.
I've recently gotten back into exercising again and I have found there are a lot of movements that I am just unable to do anymore. Even on the good days, the motions cause too much stimulation around me to make it safe for me to complete the exercises, so I've learned to modify them to work for me. Burpees are a definite no for me but I can break down the movements with small breaks in between each part and I can do it. I stay away from face-paced movements and stick with the slower motions and this helps. The exercising has been helping with my core strength and balance. But as much as I love exercising, there are days that its just impossible for me to do any of it. However, I'm learning what new things I'm capable of doing and what are some of my new limitations.
Every day is a learning experiment. It's learning what your limitations are for the day and being okay with it. It is knowing when to make a judgment call for not only yourself but those around you and decide if you should stay home or go out in public.
Unfortunately with there being very little information about MdDS out there in the general population, for most of us the choices are taken from us. Others don't understand what you are dealing with, how it feels and how to deal with someone with this syndrome. I can't just pretend like it doesn't exist. I can't make it temporarily go away so I can go into work for a couple of hours or drive to the store or walk around a mall. I can't just "walk normal" or stand still while talking to you. Sometimes it is just not a possibility.
Then again, sometimes I will be doing well that day and I am standing straight. I'm dancing and jumping around the room. I'm running. I'm bending over and standing back up with ease. No I'm not faking my symptoms or exaggerating what is happening with me. I'm just having a better day. I really really like those days.
So yea, MdDS is confusing. Mind-boggling actually. But MdDS is just a part of what I deal with every day. And I'm still coping and moving forward, even if its a crooking motion forward.
Saturday, January 9, 2016
"Eyes Wide Open"~Gotye
I'll first start by saying my vision is horrible. Actually horrible isn't a strong enough adjective to describe it. I've had to wear glasses since I was 6 years old, moved to contacts at the age of 14 for my near-sightedness. At the age of 11 or 12 my optometrist told me that around the age of 30 or so I would need bifocal lenses. He knew this my the degeneration of my eyes and knew that at some point I would be forced to need the additional help. At the age of 25 my eyes were so bad that I wasn't even a candidate for corrective surgery as I would still have to wear contacts/glasses afterward because they wouldn't be able to completely correct the problem. That all being said, I absolutely HATE wearing my glasses. I actually avoid it at all costs, which isn't good for my eyes, but, seriously, HATE wearing the stupid things. Besides when I wear my glasses it throws my MdDS symptoms into high gear. I actually see much better with my contacts.
Ok, so now the point of my post for today. This morning I had my annual eye check. Now mind you I have seen the same lady now for the last two years and never had any problems. In fact, last year she found the perfect brand of contacts for me that made my eyes feel so much better. However, she wasn't in today and there was a fill-in doc. We shall call her Dr. Witch. Now, I haven't had any problems with focusing near or far away this last year. My eyes actually have not been bothering me nearly as much as they have in the past.
Well, Dr. Witch starts her exam and before she has me do anything she checks my eyes and says that it looks like my eyes have been strained. I explain to her that I have been doing more reading on computers recently, haven't been wearing my glasses like I should and I know this doesn't help the strain. She starts having me do the typical read this line, what about that line, which is better one or two, etc. So far I'm good. Then she says okay close your eyes, she flips some switch on the the machine and then tells me to open my eyes. When I do there are two letters, but set as double vision and the letters are extremely blurry. I immediately close my eyes and beg her to turn it off. She explains that she needs to complete this exam to figure out what I need for my prescription. I try again to open my eyes. I shut them. They are moving, shifting, I immediately start rocking. I've never had this happen before and I beg her again to please take it down and I actually start having an anxiety attack. She tells me that she thinks I may need bifocals to help with my vision as I'm having issues focusing from one object to another and to complete the exam she needs to do this part.
I start to explain to her that I have the MdDS issue and that its causing my symptoms to escalate and if she looks in my chart she will see that I have this issue. I open my eyes again but she hasn't taken it down yet, so I end up pushing the machine away. At this point I'm sitting in the chair unable to move cause of the rocking and I feel trapped. I have tears running down my face because I don't know what to do. She then tells me that I'm in denial for needing the bifocals and that if I would use them it would help with the visual aspect of my MdDS. I asked her if she's ever heard of the syndrome. Does she understand what it entails? Has she had patients who have had this and changing their glasses helped them? She tells me that she's never heard of it, but if my vision is messing up the way that I'm stating, then changing my glasses will fix it. I immediately start laughing. I actually got mad at a doctor, which never happens, and took a deep breath to stop the attack. I then tell her "Do not take guesses on my care. If you have never heard of a syndrome how can you assume that your treatment is going to miraculously cure my problem? Lady, no offense but I've been fighting this disorder for 3 1/2 years. I've tried different treatments, and worked with different specialists. I'm not in denial about the bifocal issue as I've known this was part of my future with needing glasses. If the bifocals will help with the strain of my eyes, I will be glad to try it. However, since Mr. Ben Franklin invented the bifocals, I'm sure there is another test you can perform that doesn't involve double vision blurry letters. Thanks."
Unfortunately, I still needed to have my eyes dilated and checked. I just tell her to do what she needs to do so I can leave. Before I go, she explains that they can't trial the bifocal contacts because my eyes are dilated (with dilated eyes, you can't see things close up due to too much light entering the eye). So now I have to go back in a few weeks to try them to see how they work. However, it has now been notated that I won't see her again.
Its frustrating to have the syndrome. Its worse when doctors tell you you are crazy. I don't ask docs anymore for help in regards to it. I'll be glad to explain what it is, but I have a physician who helps me and from there I don't need any other doctor to tell me I'm crazy and that what I'm feeling is not really happening. So sorry mom, I showed my tail in a doc's office and got ugly. Highly doubt it was the first time, probably won't be the last. Hopefully it was though.
Ok, so now the point of my post for today. This morning I had my annual eye check. Now mind you I have seen the same lady now for the last two years and never had any problems. In fact, last year she found the perfect brand of contacts for me that made my eyes feel so much better. However, she wasn't in today and there was a fill-in doc. We shall call her Dr. Witch. Now, I haven't had any problems with focusing near or far away this last year. My eyes actually have not been bothering me nearly as much as they have in the past.
Well, Dr. Witch starts her exam and before she has me do anything she checks my eyes and says that it looks like my eyes have been strained. I explain to her that I have been doing more reading on computers recently, haven't been wearing my glasses like I should and I know this doesn't help the strain. She starts having me do the typical read this line, what about that line, which is better one or two, etc. So far I'm good. Then she says okay close your eyes, she flips some switch on the the machine and then tells me to open my eyes. When I do there are two letters, but set as double vision and the letters are extremely blurry. I immediately close my eyes and beg her to turn it off. She explains that she needs to complete this exam to figure out what I need for my prescription. I try again to open my eyes. I shut them. They are moving, shifting, I immediately start rocking. I've never had this happen before and I beg her again to please take it down and I actually start having an anxiety attack. She tells me that she thinks I may need bifocals to help with my vision as I'm having issues focusing from one object to another and to complete the exam she needs to do this part.
I start to explain to her that I have the MdDS issue and that its causing my symptoms to escalate and if she looks in my chart she will see that I have this issue. I open my eyes again but she hasn't taken it down yet, so I end up pushing the machine away. At this point I'm sitting in the chair unable to move cause of the rocking and I feel trapped. I have tears running down my face because I don't know what to do. She then tells me that I'm in denial for needing the bifocals and that if I would use them it would help with the visual aspect of my MdDS. I asked her if she's ever heard of the syndrome. Does she understand what it entails? Has she had patients who have had this and changing their glasses helped them? She tells me that she's never heard of it, but if my vision is messing up the way that I'm stating, then changing my glasses will fix it. I immediately start laughing. I actually got mad at a doctor, which never happens, and took a deep breath to stop the attack. I then tell her "Do not take guesses on my care. If you have never heard of a syndrome how can you assume that your treatment is going to miraculously cure my problem? Lady, no offense but I've been fighting this disorder for 3 1/2 years. I've tried different treatments, and worked with different specialists. I'm not in denial about the bifocal issue as I've known this was part of my future with needing glasses. If the bifocals will help with the strain of my eyes, I will be glad to try it. However, since Mr. Ben Franklin invented the bifocals, I'm sure there is another test you can perform that doesn't involve double vision blurry letters. Thanks."
Unfortunately, I still needed to have my eyes dilated and checked. I just tell her to do what she needs to do so I can leave. Before I go, she explains that they can't trial the bifocal contacts because my eyes are dilated (with dilated eyes, you can't see things close up due to too much light entering the eye). So now I have to go back in a few weeks to try them to see how they work. However, it has now been notated that I won't see her again.
Its frustrating to have the syndrome. Its worse when doctors tell you you are crazy. I don't ask docs anymore for help in regards to it. I'll be glad to explain what it is, but I have a physician who helps me and from there I don't need any other doctor to tell me I'm crazy and that what I'm feeling is not really happening. So sorry mom, I showed my tail in a doc's office and got ugly. Highly doubt it was the first time, probably won't be the last. Hopefully it was though.
Monday, January 4, 2016
"Shatter Me"~Lindsey Stirling (feat. Lzzy Hale)
In a world of rocking, you feel like you never get a break. Your brain just never shuts down. Its like someone or something is screaming loud and constant. You struggle with so many "easy" daily tasks. Its amazing how we MdDSers don't lose our sanity. And with all of the thoughts running through your brain, you have this stupid brain fog that rolls in and it either slows your thought process down or takes the thoughts away completely and you forget what you were doing, saying, figuring out.
Sometimes I have the little thoughts running loud and the important ones get hidden under the noise. I forget upcoming events, or telling someone an important topic. I tend to interrupt conversations, not that I'm trying to be rude, but if I don't get the idea out it will get lost. I feel like an idiot when I'm in the middle of the conversation, mid sentence and the idea is gone. Just completely disappears. So the other person is just sitting there like "........." Happens all the time! Its so frustrating!
Then for me, I deal with my ears "popping." There are days that my ears have so much pressure and I feel like when people talk to me, they are in a tunnel sometimes. Then my ears will "pop" and it almost sound like someone has snapped their fingers right next to my ear drum. This popping can cause some pain which is not explained. Because of the pressure sometimes I'll talk really loud and not realize it. I'm already a naturally loud person but I definitely get louder and don't realize it until I have someone say to quiet down. If the pressure is too much I tend to be really quiet because the added noise makes my symptoms feel worse.
For me, I can deal with one or two symptoms at a time. I've learned to cope and make adjustments, but you throw numerous symptoms at me at once or they jump up on the scale and its like I just want to shut down. I literally get so tired of fighting and pushing through that the only thing I can do is just crash for the rest of the day.
When I lay down though its like the brain picks up speed and wants you to contemplate everything at once. Its like "Oh we don't have to function the rest of the body right now, so....lets think of the world's problems and how we are to fix all of them." You over think everything. Every decision that you make, every feeling that you feel, it becomes overwhelming.
The point of all of this? I really don't know...haha...no seriously...I have no clue what the point of explaining all of this is because I'm still working on the coping of this particular MdDS problem. I do tend to write more things down. I utilize texting and messaging to send info to friends and family so I can say what I need to right then and there. My phone has become my buddy with its amazing calendar that is backed up to my email so I can't forget appointments, birthdays, etc.
I guess I'll just need to sit here and relax until the fog dissipates and I'll one day get all my thoughts across as I intended originally. One day.....maybe....or maybe I will just eventually go insane and my new best friend will be a padded room....only time will tell.
Sometimes I have the little thoughts running loud and the important ones get hidden under the noise. I forget upcoming events, or telling someone an important topic. I tend to interrupt conversations, not that I'm trying to be rude, but if I don't get the idea out it will get lost. I feel like an idiot when I'm in the middle of the conversation, mid sentence and the idea is gone. Just completely disappears. So the other person is just sitting there like "........." Happens all the time! Its so frustrating!
Then for me, I deal with my ears "popping." There are days that my ears have so much pressure and I feel like when people talk to me, they are in a tunnel sometimes. Then my ears will "pop" and it almost sound like someone has snapped their fingers right next to my ear drum. This popping can cause some pain which is not explained. Because of the pressure sometimes I'll talk really loud and not realize it. I'm already a naturally loud person but I definitely get louder and don't realize it until I have someone say to quiet down. If the pressure is too much I tend to be really quiet because the added noise makes my symptoms feel worse.
For me, I can deal with one or two symptoms at a time. I've learned to cope and make adjustments, but you throw numerous symptoms at me at once or they jump up on the scale and its like I just want to shut down. I literally get so tired of fighting and pushing through that the only thing I can do is just crash for the rest of the day.
When I lay down though its like the brain picks up speed and wants you to contemplate everything at once. Its like "Oh we don't have to function the rest of the body right now, so....lets think of the world's problems and how we are to fix all of them." You over think everything. Every decision that you make, every feeling that you feel, it becomes overwhelming.
The point of all of this? I really don't know...haha...no seriously...I have no clue what the point of explaining all of this is because I'm still working on the coping of this particular MdDS problem. I do tend to write more things down. I utilize texting and messaging to send info to friends and family so I can say what I need to right then and there. My phone has become my buddy with its amazing calendar that is backed up to my email so I can't forget appointments, birthdays, etc.
I guess I'll just need to sit here and relax until the fog dissipates and I'll one day get all my thoughts across as I intended originally. One day.....maybe....or maybe I will just eventually go insane and my new best friend will be a padded room....only time will tell.
Subscribe to:
Posts (Atom)